Exercise and me

Mary, my “twisted sister,” and I have found several contradictory instances in our respective experiences with Dr. Keim, and exercise is one of them. Unlike Mary, Dr. Keim sent me to exercise therapy to “help the brace work more effectively.” And, while Dr. Keim encouraged me to “stay active” throughout my care and beyond, he specifically told Mary to limit her activity, even after her surgery.

Since I’d had spondylolisthesis surgery prior to starting brace treatment, the exercise therapy may have had the dual purpose of rehabilitating my muscles. Or maybe Dr. Keim just told me the exercises would help my scoliosis as an enticement to actually do them. Since I approached the idea of exercise with all the enthusiasm of a teenager being coerced out of bed at the crack of dawn on Saturday, he obviously knew his audience.

Regardless, the exercises did help me gain more strength and flexibility to do things I hadn’t even known I was unable to accomplish – like lifting my unbent legs while lying on my back. But, after my last cast was removed, I slacked off. I was young (17), pain-free and focused on making up for the years I’d spent in braces and body casts.

Fast-forward to 1985. I was newly married to my husband, Mark, whose commitment to exercise had been reinforced during his four years of active service in the U.S. Navy. Now he was trying to convert me! I vehemently resisted, using my spinal history as a convenient excuse.

Then the muscle spasms came. They originated in the trapezius muscle and radiated up my neck. They came on quickly and without warning, like a bolt of lightning, and lasted for days. The pain was debilitating and the spasm’s strength made my neck tilt on a diagonal.

Mark took me to see Dr. Keim, the only doctor I trusted to give me an answer. X-rays showed two solid fusions and no skeletal issues, leading Dr. Keim to recommend weight training to strengthen my upper body muscles. Mark was thrilled.

Pain is a powerful motivator so, grudgingly, I learned how to use our weight machine to tone and strengthen. And, as Mark and I started making nightly visits to the homemade ice cream store just around the corner, I started to do aerobics as well.

We planned to start our family after we moved to North Carolina 1990 – plans that I thought would be detoured when I started having unexplained spasms in my lower back. Again, the answer was exercise, targeted to strengthen what is now called one’s “core,” as well as the muscles in my back.

Now, the reluctant convert is an enthusiastic advocate. Over the years, when my body’s needs have changed, so have the exercises I do every day. I’m committed to that hour every morning. It’s sacred time that everyone in the house – even the dog! – knows not to disturb. By taking an active role in the future of my health – as well as ensuring my continued mobility -- I am in control, and that feels pretty good.

Comments and "Following"

If you're here, reading my blog, I would very much like to know what you think about the information being provided, so please comment! Several folks have said they wanted to comment on this blog, but didn't want to go through the process of registering. Problem solved! I've reset the comment section so that anyone can post a comment -- anonymously if preferred.

Also, I would encourage you to "follow" my blog by clicking on the link to the right. This will NOT load your in-box up with every update to the blog, but if you have a google page, you can customize it to include blogs you follow and you'll be able to see when a new post has been added.

Thanks!

The Milwaukee Brace

I love the movie, Sixteen Candles. It’s a terrific “coming of age” story. The exception, for me, was Joan Cusack (a.k.a. Geek Girl #1) trying to get a drink at the water fountain while wearing a Milwaukee Brace.

The first time I saw it, I was startled by the fact that scoliosis – or at least a treatment for it – had “made it” into pop culture. But, the stereotypical overtones bothered me. They still do.

But I digress!

My spondylolisthesis had been so severe that my scoliosis was barely a blip on the orthopedic radar screen. Dr. Keim said if my curve didn’t worsen after my first body cast was removed, I’d be in the clear. My spine, however, had alternate plans and, seven months later, I was off to meet my brace man, Mr. Zamosky, who would custom-fit me for a Milwaukee Brace – an exceedingly awkward contraption created in 1946 by Walter P. Blount and Albert Schmidt as an effective alternative to surgery in treating scoliosis.

It was the “alternative to surgery” part that motivated me and my parents to give it try.

These days, doctors are more likely to prescribe a Boston Brace or Charleston Brace for scoliosis, depending on the nature of the curve. Both braces are lighter, less visible and more comfortable for the patient. You can see photos and read about all three at this link: http://www.iscoliosis.com/articles-brace_types.html.

Back in 1976, though, the Milwaukee Brace was the headliner in scoliosis treatment, particularly for “S” curves like mine -- which looked similar to the X-ray at this link: http://en.wikipedia.org/wiki/Scoliosis.

So, into the Milwaukee Brace I went, for 23 hours every day. It was a gamble, whether the brace would cure my scoliosis. No one – not even Dr. Keim – could know for sure if it would pay off.

Then, 2 ½ years later, I had my answer, and my second surgery was scheduled.

Dr. Keim

Unlike my scoliosis, pain was the symptom signaling the presence of my spondylolisthesis. It was at its worst when I first woke up, as this excerpt from my memoir details:

The cacophony of morning songs from assorted, northern New Jersey birds swirled through the open window with a gentle, early autumn breeze, waking me from a restless night’s sleep.

The pain was waiting for me. It would be sharp, breath-taking and unavoidable.

With a resigned grunt I rolled onto my stomach and slid my body – knees first – toward the hardwood floor. Gripping the headboard, I pulled my 13-year-old self up and grimaced at the familiar, yet surprisingly intense, sensation of an ax grinding into my lower back.

On my feet, but bent at the waist, I walked the length of my room. As my feet shuffled along the cold, dark wood floor, I massaged the muscles of my lower back. Minutes passed and the tight ache subsided, rendering me an upright Homo Sapien, as opposed to a hunched Neanderthal.

After more than a year of this daily ritual, my parents took me to a general practitioner, but he was less than clueless. Subsequent visits to two different orthopedic surgeons were equally frustrating. They knew what was wrong, but wouldn’t tell me -- much less offer a solution. The reason for their silence was yet to be revealed (can you say “fear of malpractice?”).

Enter, Dr. Hugo Keim.

He was slight of build – not much taller than my own 5’ 3” frame – with a thinning hairline and round, wire-rimmed glasses perched before two eyes -- one normal, the other not. We’d heard he was “da man” when it came to adolescent orthopedics, and I will forever credit him for saving me from a wheelchair-bound existence.

Dr. Keim explained that one of my vertebra (the fourth lumbar, aka L-4) had fractured and the two halves were separating, or "slipping." His plan: surgery, post-haste, because the severity of my slippage – measured from Grade I (minor) to Grade IV (severe) – had already progressed to DEFCON 5. There was only a 45% chance that the surgery would be successful. If it wasn’t, I would eventually become paralyzed. If I didn’t have the surgery, same outcome. Nothing like having circumstances dictate a major decision. I took my chances with the surgery.

Dr. Keim corrected my spondylolisthesis with a spinal fusion, taking grafts of bone from my right hip iliac. No instrumentation was used, and I was in a body cast for six months post-op -- bed-ridden for the first three, to enable the fusion to properly heal.

I continued under Dr. Keim’s care for my scoliosis. He’s retired now, but I thank God for his knowledge and expertise, and the impact he had on my life.

Something about Mary

Every individual is a product of his or her unique life experiences, and my spinal history has played a starring role in how I have become the person I am today. However, I don’t want that part of my life to define me because I’m much more than a spondylolisthesis/scoliosis patient.

I feel a special connection to friends and family who were “there” when I was living through my surgeries, etc. And, as I have made new friends during my lifetime, I have eventually, for one reason or another, shared at least the Reader’s Digest version of my story with them.

That’s how I met Mary.

In 2002, I met Marguerite, a woman in my neighborhood who was a fellow stay-home mom. As we became acquainted, the story of my back came out. She told me about her friend, Mary, who was also from New Jersey and had had scoliosis surgery. Marguerite offered to put Mary and me in touch and, days later, Mary called. We talked for over an hour, comparing medical notes, and soon discovered we’d had surgery in the same hospital – Columbia Presbyterian in New York City – with the same surgeon, Dr. Hugo Keim. Like me, Mary had worn the Milwaukee Brace before her scoliosis surgery and now her daughter, Emily, was in a Boston Brace, hoping to avoid surgery.

We started calling ourselves "twisted sisters." I told Mary about my memoir and she asked to read it. And I was so excited to have someone outside of my family give me feedback about it.

Mary told me about flat-back syndrome. She had it and wondered if I did, too. Unbeknownst to me, I did.

I’ve read many horror stories about aging scoliosis patients. I’m a worrier by nature so tales of agonizing, nonstop pain, and Harrington rods and other hardware breaking through the skin were not giving me a warm-and-fuzzy feeling about my medical future. But, my friendship with Mary has helped me see that every scoliosis patient is different, with their own unique issues. In return, I think I’ve shown her how exercise can help ward off or even prevent potential future problems. So, it's a mutually beneficial situation, and a very special friendship.

Flat-back syndrome

I had my surgeries during the 1970s. At that time, the Harrington rod was widely used as a “cutting-edge” technology for spinal fusions to correct scoliosis and, consequently, I have a six-inch rod aligning my spine. It’s held up pretty well through the years, with the minor exception of a dislodged hook – the result of a tumble down the stairs just a few years after my scoliosis surgery. The errant hook is a topic of discussion every time I have a chest X-ray. I’ve learned to anticipate the doctor’s efforts to break the news to me gently by politely waving him/her off with an “I know, a hook dislodged from my rod. Now let’s talk about…”

Over time, though, my Harrington rod has contributed to a malady known as flat-back syndrome. Until recently, the medical profession didn’t recognize this condition for what it is – a loss of the spine’s natural curve that enables “normal” folks to walk with a good posture. However, through much effort on the part of aging scoliosis patients and other advocates, orthopedists now acknowledge flat-back syndrome and the problems it creates for those afflicted with it. You can read more about it at this link to the National Scoliosis Foundation’s website: http://www.scoliosis.org/resources/medicalupdates/flatback.php.

I recently had the degree of my flat-back syndrome measured at my orthopedist’s office and was told that a worsening of the condition is NOT inevitable if I can keep my hip and spine muscles flexible and strong. My daily regimen includes stretching and strengthening exercises for that precise purpose, so I’m hopeful.

My flat-back isn’t painful, but it does make me feel like a half-folded lawn chair sometimes. And I am very self-conscious about people noticing – and sometimes commenting! – when I’m not walking “right.” But it is what it is. There are surgical options, but I’ve had several doctors tell me not to bother if I’m not experiencing extreme pain….basically, “if it ain’t broke, don’t fix it!”

Welcome

This is momentous. My first blog, first post. And I don't have a clue where to begin!

I'm starting to blog to talk about my life after spinal surgery. I've had two operations, one at age 13 (for spondylolisthesis) and the other at age 16 (for scoliosis). The experiences made adolescence that much more challenging, but I survived -- and now I'm writing a memoir about it.

When my last body cast was removed, I thought my back troubles were over. Ah, the naivete of youth! However, I admit I have had a much easier time than many others who have had similar procedures. I look forward to hearing about your experiences with the aforementioned conditions -- or anything else you'd care to share.

Thanks for visiting. TTFN.